Texts First conferences Mockou
Information Letter
The First Eurasian Conference for Rare Diseases and Orphan Drugs & Third All-Russian Conference for Rare Diseases and Rarely Used Medical Technologies “Lifeline” was taking place in Moscow on June, 21-23, 2012.
One of the features of this event will be the simultaneous participation of all parties interested in developing the treatment, diagnosis, and working out innovative treatments for rare diseases: patients, medical and social workers, representatives of public authorities, physicians, researchers, pharmaceutical manufacturers, and non-profit organizations from different countries of the world. These conferences – the first since 2010 – constitute a unique resource, which provides an effective platform for sharing experiences, not only between Russian and foreign participants, but they also represent a powerful tool for developing integration processes between Eurasian countries. The conferences will bring together representatives from 31 countries.
Conference were focus on the following topics:
- The First Eurasian Conference on Rare Diseases & Orphan Products were aimed at the “Global Policy on Rare Diseases and Rare Orphan Drag”;
- The Third All-Russian Conference for Rare Diseases and Rarely Used Medical Technologies “Lifeline concerns the most actual topic in our country at the moment – managing epidemiology, establishing registers, standards of treatment and rehabilitation, and another important aspect – palliative care for patients with rare diseases.
A group working on the EUROPLAN2 project were organized at these conferences (meeting of participants of two seminars – “Rare Diseases as a Priority for Public Health and One of the Strategic Directions of State Policy”, held in September, 2011 and April, 2012 within the framework of the EUROPLAN2 projects); the results of the EPIRARE project (project on epidemiological registers) were also presented. For the first time in our country, such conferences was include a plenary meeting, during which the representatives of the largest Russian and European pharmaceutical companies werel appear and present their work in the field of global international policy.
Conference Organizers
- the National Association of patients with rare diseases – “ Genetics „
- Federal State Budgetary Institution – Federal Scientific and Clinical Center of Pediatric Hematology, Oncology and Immunology named after Dmitriy Rogachev
- the Eurasian Alliance of rare disease
- the Bulgarian Association for the Advancement of Education and Science
- the National Centre for Rare Diseases of the Italian Institute of Public Health
The Conference were held under the official auspices of the Ministry of Health Care and Social Development of the Russian Federation.
General Information
Conference dates: June 21-23, 2012
City and country: Moscow, Russia
Venue: Hotel “Izmailovo”, Moscow, 71 Izmailovo Road, Buildings “Gamma-Delta”.
Conference Website: www.rareconf2012.org
First Balkan Conference
In 2012 the organization aims to further improve the form in which it has been developing until now. This is a natural result of the successful activity on a national level and the huge differentiation between the health systems of the Member States of the European Union
In the start of its activity NAPRD introduced the path of its development in international meetings on a Balkan level – Serbia , Macedonia , Croatia , Romania. Consequent to that in those countries associations of patients affected by rare diseases were started and began their development.
NAPRD was part of the organizing committee and presented its experience in the first National rare diseases conferences in Russia, Georgia and Turkey .
In order to achieve greater efficiency through exchange of experience and unification of efforts NAPRD was initiator and was organize Balkan Patient Meeting “Together To Success”.
The Event was take place in Sofia, in Park-Hotel Moscow between 23th and 25th of March 2012.
Lead representatives of the patient movement from European and international organizations was invited.
Representatives from the Balkan countries was present from – Greece , Romania, Turkey , Croatia , Montenegro , Slovenia , Serbia , Bosnia and Herzegovina , Macedonia and Albania.
Special guests were our partners from Russia and Georgia.
The number of participants was 200.
Leading specialists in the field were present their accomplishments and problems in the area on a national and international level.
We discussed important issues. Everybody truly believe that the dialog is the first step to resolve problems regarding rare diseases. This is also the main task for the National Alliance of People with Rare Diseases – validation and implementation of common European values universality, access to good quality health care, justice and solidarity.
Patient and Associations, members of NAPRD were active involved in the event. .
We NAPRD believe that the realization of the meeting was great benefit not only for people with rare diseases from Balkan Countries but also for the Patients organization worldwide.In 2012 the organization aims to further improve the form in which it has been developing until the event. This is a natural result of the successful activity on a national level and the huge differentiation between the health systems of the Member States of the European Union
Seccond Balkan conference
In 2013 the organization is aiming to further improve the form in which it has been developing until now. This is a natural result of the successful activity of the organization at a national level and the huge differences we realise between the health systems of the European Uniont Member States.
NAPRD presented the development and the activities of the organization at a number of international meetings within the Balkan region, like Serbia , Macedonia , Croatia , Romania. As a result of the exchange of experience and policies at these meetings associations of patients affected by rare diseases in those countries were founded and developed.
As a part of the organizing committee NAPRD also presented its experience at the first national rare diseases conferences in Russia, Georgia and Turkey .
In order to improve the network efficiency and the exchange experience between the Balkan countries NAPRD is organizin a Second Balkan Patients Meeting to be held in Sofia, in Park-Hotel Moscow between 20th and 21th of April 2013 under the title “Better Communication – Better Treatment”.
Leading representatives of the patient movement from European and international organizations will take part at the meeting.
Representatives from the Balkan countries like Greece, Romania, Turkey , Croatia , Montenegro , Slovenia , Serbia , Bosnia and Herzegovina , Macedonia and Albania will be presented. Patient and Associations members of NAPRD will be actively involved in the event.
Leading specialists in the scientific and medical fields will present their accomplishments and discuss their views in the rare diseases area bot at a national and international levels.
The validation and implementation of common European values like universality, access to good quality health care, justice and solidarity will be among the main topics of the discussiona.
The number of participants was more then 200.